Abstract
People with learning disabilities continue to be denied the opportunity to be actively engaged in the production of research. In this chapter, we draw on two studies in which we attempted to be inclusive of people with learning disabilities. The first study explored experiences of women with learning disabilities in relation to mental health; the second study delivered an intervention designed to reduce falls for people with learning disabilities. We address four aspects of the research process in both studies that highlighted the importance of ethical considerations that take into account inclusivity, recruitment, informed consent, communicating research-related tasks, and interview approaches. We outline how relational ethics should be central to efforts to be responsive in research that is inclusive of people with learning disabilities.
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Notes
- 1.
People First New Zealand, a self-advocacy group, has challenged disability researchers and the wider disability sector to use the term ‘learning disability’ instead of ‘intellectual disability’. They feel the term is more reflective of the difficulties they experience, respectful to them as people, and easier to say. Therefore, ‘learning disabilities’ is used instead of intellectual disabilities throughout this chapter, except when intellectual disability was used in the original title of a study.
- 2.
In order to limit the extent to which we ‘other ’ the individuals to whom we are referring when referring to our experiences of working with people with learning disabilities in research contexts we have, as much as possible, used the terms people (or women specifically) to refer to those we were inviting to take part in research, and participants to refer to those who were taking part in our research.
- 3.
Two of the authors of this chapter, Brigit Mirfin-Veitch and Jenny Conder, were research team members on the Mental Health and Wellbeing of Women with Intellectual Disability study.
- 4.
The research was approved by the New Zealand Multi Region Ethics Committee (reference: MEC/09/05/054).
- 5.
Leigh Hale, Gareth Treharne, and Brigit Mirfin-Veitch were research team members on the Prevention of Falls for Adults with Intellectual Disability study.
- 6.
The study received ethical approval from the New Zealand Upper South A Regional Ethics Committee (URA/I1108104).
- 7.
Locality organisations are organisations that have agreed to be involved in research, usually with regard to participant recruitment, or as a site for data collection. In New Zealand, ethics committees require signed evidence of each locality organisation’s agreement to act in such roles.
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Acknowledgements
We would like to acknowledge the New Zealand Lottery Grants Board, Lottery Health Committee, and the Health Research Council who funded respectively the two studies referred to in this chapter. Finally, we express our appreciation for the contributions of all those people who contributed to the research described here in a myriad of different ways.
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Mirfin-Veitch, B., Conder, J., Treharne, G.J., Hale, L., Richardson, G. (2018). Challenging Methodological and Ethical Conventions to Facilitate Research That Is Responsive to People with Learning Disabilities. In: Macleod, C., Marx, J., Mnyaka, P., Treharne, G. (eds) The Palgrave Handbook of Ethics in Critical Research. Palgrave Macmillan, Cham. https://doi.org/10.1007/978-3-319-74721-7_23
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